"Ask Jessica!" Introducing a New Advice Column from Our Director of Social Services

In her first post, Jessica responds to a frequently asked question: "How can I explain lupus fatigue to my family and friends?"

Dear Jessica,

I need help explaining what lupus fatigue feels like to my family and friends. Sometimes they think I’m just being lazy. Do you have any suggestions?

Jill
NYC

Dear Jill,

So many of our patients have fatigue, and like you, they say that since they don’t usually look sick, it’s hard for friends and family members to really “get” just how wiped out they are.

To make matters worse, lupus fatigue is not only unpredictable but can be maddeningly hard to describe. Some people think of fatigue as simple tiredness, when that’s not it at all, as you know. How many times have you heard, “Just push yourself a little harder?”

When I ask our patients to explain what lupus fatigue feels like, they make comparisons. “Fatigue feels like a heavy stack of metal sheets sitting on my chest –-hundreds of pounds worth,” said a young woman at a recent support group. For her, fatigue is an extremely heavy force that she cannot move, no matter how hard she tries.

Others say that the fatigue of lupus feels like they have been drained of all energy…as if something vital is suddenly missing. All the light bulbs inside have burned out at once. A bundle of balloons has popped, and suddenly fallen to the ground. “I feel limp like a rag doll or a puppet whose strings have been cut,” one support group participant said.

There is one way of describing lupus fatigue that I often share because it’s so visually clear and concrete. It’s called the Spoon Theory, and it explains how a person with lupus fatigue must be choosy about what he or she does since on some days, there are very few rations of energy (spoons) to go around. Read the theory here. You might want to consider trying it the next time you are telling a friend how you feel.

Regardless of how you may describe your fatigue, one thing remains constant: it’s not about lack of effort. “No matter how hard I try, I just cannot get out of bed, and I really want to,” is something I often hear. It’s an important thing to note. You are definitely not being lazy.

Do you have ways of describing fatigue, or “comparisons,” that you think others might like to hear about? Tell us about them in the comments section below.

Update: We are no longer accepting comments on our site, but please share your thoughts on our Facebook page.

Ask Jessica! Do you have questions on how to successfully cope and manage your lupus life? Twice a month, Jessica Rowshandel, our director of social services, will post answers, advice, and feedback that you can use right away—and may select yours to feature. Send your questions to her at jrowshandel@lupusny.org or post them in the comments section below.

Disclaimer:

Jessica Rowshandel, MSW is the S.L.E. Lupus Foundation’s Director of Social Services. She is not a physician. The advice provided is for educational and informational purposes and the Foundation does not recommend or endorse any particular treatment or therapy. Lupus is a very individualized illness; consult a health care professional before making any decisions about your care.